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feeling alone

Hi, I am 19 years old and just diagonosed with lupus. I'm feeling a little bit alone because there really isn't anyone to talk to about it. My friends and family don't really know about the disease, and I hate to burden people everytime that I need someone to talk to. This website is great because it lets me know that there is other people out there going to the same thing as me. If anyone has any tips please let me know. Thank you

Welcome to our forum and our family. I understand, completely, what you mean by the lonliness associated with being diagnosed with Lupus. Many of our complications are internal and, when people cannot see physical manifestations of your disease, they tend to misunderstand and minimize your symptoms. Lupus is a very hard disease to describe and most people do not understand what you are feeling. I used to tell my friends, when I was first diagnosed: Imagaine that you were having the worst flu symptoms you have ever had in your life (aches, pain, fatigue, nausea, sore muscles, etc.). Now, imagine that you are going to have these symptoms every day, 24 hours/day for THE REST OF YOUR LIFE!
Then I would ask: "Now, what things would you do or not do if you were having the worst flu symptoms of your life?" Those are the things that I will have to consider for the rest of my life, how to change my lifestyle so that I can have some sense of normalcy while living the resto of my life with the worst flu symptoms of my life"
That generally gave them a rudimentary understanding of how I felt, so that when I said "I can't go here; or I can't do that with you; or, I just don't feel up to it today", they did not ask a lot of stupid questions and they understood why!
I always say that the best thing is to just let them know and educate them a bit. Then you will not have to do a lot of explaining.
We do not want you to ever feel lonely, but I know that it is going to happend now and then. But please know that you are not alone!! We all know what you are going through and we are all here to help you in any way that we can. This site is here just for that reason!!
Peace and Blessings
Saysusie

Dear Saysuzie.
I was juts reading this post and came across your reply and I almost cried with relief.

This is EXACTLY how I feel most of the time and I find it impossible to find words for it.
The irony is that I look well, completely normal and healthy, so nobody can see how bad I feel inside.

I will remember what you said and make a note of it for when I am asked next time why I do nt feel like goping out for a walk on a sunny day or to a friend for dinner etc.
Thank you very much for your words - this was most helpful
Arinka

Yes, one of the most infuriating things we have to deal with is the "You Don't Look Sick" syndrome from people who just don't understand. No, our bodies do not have deformities, or open oozing wounds or broken bones or emaciated appearances (although, at times, we all have probably had one or two of those!), but our insides are going through hell and our immune system is under attack, so we are devastatingly fatigued and sick. So, all that I could think of that everyone would understand was the "Worst Flu of your Life" explanation. You are o.k on the outside, but there is a war raging on the inside!! They seem to almost always get that explanation :lol:

Another thanks

The flu explanation makes so much sense...and it's much easier for other people to understand than some long-winded explanation of what's going on. Even though the "You Don't Look Sick" syndrome is frustrating, I actually find myself falling into it sometimes. Whenever I'm feeling good I tend to slip away from diligence in taking care of myself